An All-out RANT on Apathy

My name is Rachel Kenyon. I live in Connecticut and I am a proud army wife… blah blah blah.

I am pissed.

Why?

Jess at Diary of a Mom summed it up pretty well, “The hoofbeats ain’t comin’ my friends, we ARE the cavalry.”

Yesterday, I devoted an entire Saturday to working on the Caring for Military Kids with Autism Act (CMKAA) – H.R. 2288. I worked on the site I had created back in June when the bill was introduced to try to streamline the process for lending support.

I can’t make it any easier to do. A caveman’s dog could do it. I give all of the information necessary to understand why this bill is critical to the estimated 30,000 military kids living with autism and their soldiers who serve. I wrote a sample letter for folks to cut and paste, and with one click every citizen in this country has a direct link to contact their Member of Congress even if they have no earthly idea who that is.

What more could you ask?

I read other military parent blogs, I scan the dozens of overlapping military social networks. I hear a lot of complaining by our families about how hard it is and a lot of shock when civilians hear what we are facing in the shadows of an autism diagnosis. I also know that not nearly enough of the ‘outraged citizens’ of our country – military or civilian – are outraged enough to take action.

So let me break it down once again.

1 in 88 military kids with autism. Less than 10% get the treatments they need.

Deployments and moving every couple of years all suck. Our military families embrace the suckage as best we can because that is what we signed up for. But as Household Six writes, “I wouldn’t tell the woman with breast cancer, ‘Well, you knew what would happen having breasts and all.’” Seriously. No one joined up counting on autism and a complete lack of appropriate services while serving their country. I often share the comparison that my daughter had open-heart surgery at four-months-old to the out-of-pocket-tune of eight bucks for hospital parking, but autism will bankrupt you, screw with your marriage, scar the typical siblings for life and leave you wanting a very stiff drink with breakfast.

TRICARE can kiss my ass. The DoD can kiss my ass. Apathy can kiss my mo’fo’ ass. None of this has to be so damned difficult. Countless studies, reports and prior attempts at legislative fixes make it clear – our kids with autism need intensive treatment and military life creates real barriers to care. No soldier should have to serve for more than 20 years and not be able to retire because of a child’s disability. No military family should be moved across the country or across the globe on orders to do so and lose all services for their child with autism.

Why are we not seeing this change?

Because not nearly enough – not nearly enough – of the families affected by these circumstances are standing up and speaking up. Not nearly enough – not nearly enough – friends, grandparents, aunts, uncles, cousins, teachers and neighbors are taking three minutes out of their lives to say something about the mistreatment of our military families and their children with autism. And like spoiled children, Congress accomplishes little because We The People are not holding them accountable. We simply cannot accept that.

There are a handful of amazing military parents of children with autism fighting every day, sacrificing themselves for the good of all. They are the real heroes. I am talking about moms and dads that make me look like a wet-behind-the-ears-Private with underwear on my head and a kevlar vest around my ankles. But like me, these military parents aren’t waiting to hear the hoofbeats of a cavalry that isn’t coming. We have figured that part out. But none of us can do this without the voices of those we are trying so desperately to help.

Speak up. Tell Congress that our military’s service to our country is worthy of care for all military children.

There is no excuse that this is too hard, or takes too much effort. If you have time to take a dump in the bathroom alone for more than three minutes, consider yourself blessed with a luxury that many parents of autism do not share. So pay it forward and take three minutes to save a child with autism.

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About Rachel Kenyon

Rachel Kenyon is an Aspie, Advocate and single mom of two beautiful babes - The Boy (11) and RM (8). The Boy is a Legomaniac and RM is a kick-ass diva with Autism and 4q Deletion Syndrome.
View all posts by Rachel Kenyon

DONE! I’m not in the military, but I have family members who are. And as an SLP, I know how hard it is to get TRICARE to pay for any therapy! I have seen how hard it is for typically developing children to adjust to frequent moves and deployments. I can not begin to imagine what it would be like for a family dealing with autism.

You keep ranting! In our country today, it seems like that is the only way to get heard. Our leaders seem to be stuck in a cycle of partisan bickering. They seem to be more interested in making sure the opposing party doesn’t accomplish anything, than in accomplishing anything themselves. This bill should be supported by everyone, no matter their political affiliation.

Rachel LOVED what you wrote! I say this EVERYDAY! Navy wife for 16 years, mother of a 6 year old son with aspergers and an 8 yr old brother who does everything he can do to help with health problems himself having a gallbladder taken out last January with stones and another surgery to find out he has this extreme food allergy and while fighting tricare to get my son back in aba after moving and they cant find us listed ANYWHERE! I’m like REALLY!! REALLY!!! GOT TO BE KIDDING ME!! THen all the lovely bills piling in for surgeries and being on tricare standard because prime lets face it sucks!! My husband deployed, ship ombuds and FRG does nothing to help be supportive give me a break they might break a nail. On top of fighting for orders and then move us again and here we are starting over and ohhh they never pay us to move we are still fighting for our money moving a family with an exceptional family memeber and no dla!! SERIOUSLY WHAT”S WRONG WITH THE MILITARY SYSTEM! On a good note, we are now finally in aba, I drive who knows how long to aba, empty my gas tank, I know I won’t get work wiht the schedule I have, my other son is healthier and gluten free wheat free, soy free everything, my husband fixing to deploy again. I wish those in congress would walk a mile in our shoes and see what’s it’s like. Rachel I applaud you 100 times over I was so happy to read it that someone feels the same way I do and gets it!!

I’m not a military family, but I am single mom of 3 children, 2 of whom have autism. I shared your rant on FB and asked people to please read it, click through and contact their congressperson. (I contacted mine just now).
I have had to fight so hard, and continue to do so every day for my 2 sons – and I have a constant home base! I can’t imagine how to get qualified services for a child with autism who has to move around every few years because of the military and on top of that, if you have to deal with a parent deployed. I support you all, and all of you military families with a child with autism – I don’t know what to say – I do know how hard it is for me and my family, but I can only imagine how much more trying it is on you. Stay strong – and I’m fighting alongside you on this!
Linda

Thank you, Rachel. We’re in the USAF, stationed in Germany, and having a very hard time receiving appropriate services for our daughter w/ Severe Autism. This really helps & I’m also sharing it with friends. Thank you for being an advocate for our children.

WELL PUT, RACHEL! I couldn’t thank you more… I’m in this fight with you for my little boy who receives absolutely no ABA or other necessary therapies because his father medically retired out of necessity after 2 years in Iraq. This system HAS to change!

[…] politics out of this blog. But I’m making an exception after being contacted by Army wife Rachel Kenyon (of the blog Stim City) and asked to support Caring for Military Kids with Autism Act (CMKAA) […]

I would love to do this for you, my husband and I don’t have any kids yet, but I understand the need you have. My sister is autistic and I see the battle my parents have to fight to get proper care for her. (And they don’t even have to deal with TRICARE!) I followed your link and everything, but we are currently overseas, would we write to our representative in our home ZIP? Because our APO ZIP won’t pop anything up. Thanks